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Negative test results and Medrol dose pack?

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Posted 11/7/2006 3:58 PM (GMT 0)
Hi,

 

Last Novemeber, I began having joint pain and swelling in my knees and hands ,so I went in to my primary care doctor and he decided to do some testing.  I was tested for RA, Lupus, Lyme disease etc, anything that could possibly cause my symptoms.  Everything was negative, so he decided to refer me to a Rhemuatologist, and from there I had more testing, all negative.  I am now a year later and still negative.

 

For the past year, I have been on Relafan (sp?), Valtoren, Suldinac, all without success.  Yesterday I went in because the pain and swelling was just too much to stand and I was given a prescription for a Medrol dose pack.

 

Has anyone taken this?  Yesterday, after taking 6 of them I felt really good! but when I woke up this morning, I was back to square one :(  I took one before breakfast, as directed and cannot take another until lunch time.  If you have taken this, is this the way it is supposed to work? I thought the symptoms would stay away!

 

It is terribly frustrating to have all of the lab work always coming back normal but to feel so awful and hurt so much. I do a great deal of driving (commuting) and at the end of the day I feel crummy.

 

I'm sorry this was so long!  I am hoping there is someone else here like me?

 

 

Posted 11/7/2006 4:52 PM (GMT 0)
You should call your doctor and tell him/her how you feel.
I hate these medrol dose packs because it starts off so high and tapers off just to fast .
I had an asthmatic attack to these packs back in August .
Maybe your doctor can switch you to a low dose of prednisone for a couple of weeks instead.
Good luck to you and keep us informed
(((Hugs)))
Posted 11/7/2006 5:12 PM (GMT 0)
Hi and thank you for your reply.

 

I was just so happy to finally get something other than another regular anti anflamatory, but I thought it was like regular prednisone as I too have asthma.  Well, for one day it was really really nice :))

 

Since all of my testing is negative, my doctor has been very hesitant to put me on anything other than the ibuprofen based medications. I had hopes for this one!

 

Thanks!

Posted 11/7/2006 6:59 PM (GMT 0)

hey Mom,

did you start @ 6  four mg pills; then the next day go to 5? then 4? and so on?  it should be a taper down dose pack.

prednisone works a little better, a little stronger.  if a person has fibromyalgia, all of your labs could come in negative.  some other type of autoimmune arthritis' will have a -RF and negative labs as well. if you have osteo arthritis, none of the autoimmune labs will show...maybe except for an elevated CRP perhaps.  what about xray changes in your joints?

can you describe your joint pain more precisely?

how did you respond to NSAIDs?

i know how frustrating this is. believe me...it takes sometimes YEARS to get treated correctly or to be diagnosed.

you hang in there.

sincerely,

erin

Posted 11/7/2006 8:36 PM (GMT 0)
I agree with erin, It took a MRI for the doctor to tell me that I have osteoarthritis.
It can be quite frustrating
Have you had CT Scan or any MRI's?
Just a suggestion
I still think the medrol packs are just to much prednisone in such a short time frame.
Take care and I wish you well.
yeah
Posted 11/7/2006 9:41 PM (GMT 0)
Hi Erin,

 

My joint pain and swelling is always in my fingers and knees and I also have the pain in my hips.  I wake up in the mornings and my fingers look like sausages they are terribly red and swollen.(across my knuckles)  The symptoms tend to peak and flow, for example one week it will be mild and then next week...wham!  My main difficulty with the NSAIDS was finding one that didn't uspset my stomach,(most gave me terrible low back pain) I have a lot of trouble with Ibuprofen as it is.  The latest one that I have tried is Mobic, and it didn't bother me at all, but the pain was too much even with the mobic.

 

If I didn't have the swollen fingers, I really would think I was nuts!  because I am begining to wonder if my doctor thinks I'm insane.

 

 

 

To answer your question,  yes I did start out yesterday with taking 6 pills.  I got my prescription early enough in the day that the pharmacist told me to go ahead and take 3 right away, so I did and by bedtime I felt great!!  However, I feel not so well today and my face feels and looks flushed.

 

My rheumy told me yesterday that I would feel great (his words) on this medication, and I did with 6 pills, but it needs to stay at 6 :) 

 

No, I have not had any x-rays, ct scans or MRI's.

Posted 11/7/2006 9:46 PM (GMT 0)
hi momto3 and welcome!

many of us are like you! gosh atleast 10 years ago i started with joint pain and all tests were negative, they told me i had fibromyalgia and treated me with relafen type meds. i mainly took tylenol and many stomach issues too!

this past spring i couldnt hold things, little grip, swelling, and pain esp my wrists and fingers. took blood tests and the RA test came back negative but i did have other high test results and xrays showing the inflamation. my rhuemmy told me like only 70 % people test positive for rhuematiod factor while others are based on history. i had hx of colitis, iritis, reynauds, and fibromyalgia so he said i had RA based on all my history, xrays and blood work.

make certain the doctor you are seeing is looking at more than jsut blood work. also did he mention fibromyalgia at all? if u google RA you will get diagnosing standards and also fibro. one is inflammatory and one not ..... i think? Both hurt! as well as many other forms found here.
the medrol pack made a huge difference for me the first 3 days and then when i tapered it all hurt even worse, that is how my pcp sent me then again to a rhuemmy.

hope that helps u know your not alone!
good luck momto3 ~*yalinda, mom of 2 :)
Posted 11/7/2006 10:23 PM (GMT 0)
Hi yalinda (mom of 2 :) )

 

My rheumy is starting to wonder, it has been a year and he said since my test were all negative starting out, he was hopeful that it was some sort of virus and that it would just run its course.  However, it is not looking that way now :(  I  keep thinking it is just going to go away...one morning I will wake up and it will just be gone!

 

He also told me that there is a small percentage (10%) that never test positive, and it looks like it may be the case for me. 

 

This is miserable isn't it? my husband is really wanting to  get a hot tub put in, hoping it may help with the swelling and pain.

 

Have you ever taken plaqenel? (sp?) my doctor is considering this as a next step.

 

Thank you for the welcome :-)

Posted 11/8/2006 1:13 AM (GMT 0)
Hey Mom, Your story sounds familiar. 10 years back, I had pain and swelling in my sternum and collar bones (weird, eh), was in so much pain, but I always tested negative for everything. I struggled my way through flare after flare and finally gave up on docs when they called it Fibromyalgia and started just perscribing anti-depressants. I bailed on all the meds and exercised like a nut, which helped some until . . . about 6 months ago I started swelling in all my joints and my ankles got bad enough that I could barely walk.

So I FINALLY went back to a doctor expecting to be sent home with a pat on the head and some Advil. But guess what? I finally tested positive on the inflamation markers and the ANA test. Still RF - but now I've got the RA / maybe Lupus wait-and-see diagnosis. Started Plaquenil 5 months ago and last month it started to work wonders. I have a ways to go before I feel "normal" (whatever that is, I don't even remember!), but I can walk now, do stairs, carry my kid, etc.

Hang in there. You might just be in the early stages. Terrible thought, I know. And no matter what these docs think, you're not crazy (I know I felt that way, hence my signature). Good luck and keep us posted!
Posted 11/8/2006 3:09 PM (GMT 0)
Hi Rocky,

 

I do know what you mean, and I think even my husband is starting to think I'm a bit nutty smurf .  I always have the swelling in my fingers and my knees always hurt but the flares as you called them, come and go and get miserable!

 

I have been going in every 2 to 3 months for a follow up and my condition has not changed and in between visits, I will have these "flares".  I went in on Monday because it was so painful I couldn't stand it another second. I have a prescription for plaquenil as well, I just wish it did not take so long to begin working.  I am so happy to hear that it is beginning to work for you!  I know  for one night that I took the medrol, the feeling of no swelling or pain was fabulous.  I can only imagine feeling like that on a daily basis :)

 

There are times I do feel like I am crazy, because nobody really understands just how debilitating it can be.  Some days I just get the bare minimum done around here.  There are days it wares on me and I get depressed but I keep plugging along :)

 

I had a flu shot on Friday and maybe it contributed to my flare, since whenever I get sick, I end up having a flare.

 

Thank you for sharing your story, I'm glad your quality of life is improving! It does give me hope for the plaquenil :)

 

 

Posted 11/11/2006 4:40 AM (GMT 0)

hey mom!

i feel for ya.  just know you're not alone.  for only being 25...like a BIG DAY for me?...i shower, dress...and then maybe be on my feet for a little while. and that's like IT. 

i was worse, couldn't even walk at a time...had to crawl, so i'm grateful i can wash my hair, dress & hopefully shower every day. LOL.  and the days i can't do those things? those are so hard to deal with & it seems like it doesn't get easier to deal with.

in september i was alright. i worked a little bit & it felt so GREAT to put in a day and then it was really fantastic to do it again the next day!  short lived...that's why AI diseases are so hard, they hit in the prime of life most times.

it's normal to feel crazy...we've all felt it. and then ya bring in to the docs office your "I'm NOT CRAZY" diploma & everything is groovy again. lol.  you keep on pluggin' away! that's what we have to do.

Posted 9/15/2007 11:47 AM (GMT 0)
Hi there, it IS possible to have sero-negative rheumatoid arthritis. I have had negative labs too, but a few x-rays saved me and showed som joint degeneration. My rheumy said it is possible, he has about 8 patients that just never tested positive; it could also be diagnosed as psoriatic arthritis, which is a type of inflammatory arthritis that often mimics RA but it causes sausage like finger swelling; my docs can't agree what I have; I had juvenile arthritis. So far I've gotten (1) polyarticular inflammatory arthritis (2) seronegative arthritis (by 2 docs) (3) possible RA probably psoriatic arthritis (current rheumy). Regardles, I am trying a TNF blocker. I was on methotrexate before and vicoprofen for pain (I have a 1, 2 and 3 year old child, the pain was so bad I could not move many days) and I do acupuncture and use infrared heat to help. Hope that helps. You are not crazy, it is possible to have it and joint degeneration does not need to start in the early stages for RA to be present. Some people just never come up possible. In fact 20 percent of patients I think? overall with sero negative RA never turn positive, that doesn't mean you don't require treatment and deserve relief from your pain!!!
Posted 11/17/2009 3:32 PM (GMT 0)
while waiting for a total hip replacement surgery for osteo arthritis in July my hands and wrists became swollen and painful. doc sent me for blood tests and an X ray. Sed rate was up but no real arthritis shown in the Xray He immediately sent me to a RA doc ( thank God) and while I tested negaive for RA he said while it was early I had it and that at least 2% will test negative. I am on methotrexate (4 weeks) and no real pain any more. So hang in and believe you probably do have it.

Also anyone who needs hip replacement know there is a new surgery called anterior approach. It is so easy! no physical therapy! no real down time. I walked with the walker the first week, a cane the second week and by myself the third week and drove at the end of the third week!
At lease one hospital in every state is doing it. I had mine at Mercy Hospital in Baltimore.
No one should have the old procedure any more!!!
keep the faith
Posted 11/17/2009 9:41 PM (GMT 0)
Wow this is a super old post!  2006??? I'm still here, and have since been diagnosed with RA and have taken many medications, including MTX for a few years now.  I hope it helps you as much as it has helped me.

Good luck to you!

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